My right ear started having symptoms about 8 years ago, the left ear about 2 years ago. I have consistent tinnitus in both and very poor hearing in the right all the time, with intermittent very poor hearing in the left. On bad days I can't hear unless I get very close and the person is nearly shouting at me! And then if the shouting is too loud it hurts like hell. My ENT has thought it to be a case of autoimmune disease and I've been taking Humira for about 6 weeks. Since then, I've had a couple of 2 week plus periods of very poor hearing on both ears, unsteadiness, and a few brief episodes of strong vertigo. I take 5mg Valium if vertigo comes on and it has gone away within 10 minutes, which is very different from my previous episode of hours long vertigo and vomiting. So I think mixed results so far, and I've agreed to keep on with it for another 4 months, despite my worries of side effects. I also started valacyclovir about 4 months ago and continue to take 1g/day. It doesn't seem to be helping, though I don't know where I'd be if I hadn't started it. On my last visit to the ENT surgeon, he said a Labyrinthectomy in the more active ear would be the next step if the Humira or another similar drug fails. That to me sounds drastic as I am not spinning constantly or having drop attacks. I do have dizziness, or unsteadiness most days and the deafness and loud tinnitus is tiring, isolating and depressing. It seems that I have done everything I can, and should let it run its course while I continue to manage the vertigo. I don't know what else I can do to push back on the assault. Do any other bilateral sufferers have advice?
Good morning. I will respond here but if we get into a deeper conversation with Humira etc maybe good to pm. I don't have that set up but will for your situation if you ever desire. You are me about 20 years ago. I am bilateral. Laby L ear. Deaf R ear. So totally profoundly deaf. Still some occasional dizziness (but not as much violent spins) in the R ear. Continue to take a diuretic, valium at onset of attack, and also Humira (for me Humira was RX'd for UC not MM) But my ear doc was happy to have the Humira introduced. Also have autoimmune etiology. In my case the immune depressant (Humira) was introduced far too late to help stop any progression of damage to both vestibular and hearing function. So I am in it for the long haul. I know that once the hearing and vestibular cells are damaged....there is no going back. I am considering an implant. But three opinions from best docs in the US all say since my one ear is full laby (no cochlear) it can't be implanted. So I have one shot in the R ear to do a CI. But latest info and testing reveals a well know finding....that my vestbuliar portion of the inner ear has deformed or collapsed and is clearly in the pathway of electrode insertion. So most say a second laby combo with CI is the best route leaving bilateral disequilibrium....but hearing. Ugh. Others talk about imaging again and then map an electrode route that misses the definitive location of dilated balance mechanics. And then in this case if major balance destruction occurs then just kill it all off with gent via muscle injection. All of this being said so you will know I very much understand your situation. I can't write a two sentence solution for you. My only one thought is in your case to try low dose gent in the major offending ear. See if that can help bring dizziness under control. I think managing the vestibular issues first is always a good route. then you can fix (implant?) hearing a tad later. Here is a good article for you.. https://www.dizziness-and-balance.com/treatment/ttg.html Most of all know even with the worse possible case....you will be ok....there are many who end up losing balance and hearing in both ears....get Ci (s) and live a very normal life. So there remains treatments and full possibilities for you. Key is a great doc, having a good step by step plan, and then working the plan to resolution. Well enough for now. Holler back if you want to talk more on or off the board.
oops. forgot to say while writing your reply i did go ahead and set up a message icon on my account. so all you have to do is click there. either way is fine. or ok not to respond. i understand. either way best of luck.
What brand of valacyclovir are you taking currently? There have been a LOT of negative reports about Mylan and some other brands on this and other viral forums. If possible, take the brand name Valtrex... or Northstar generic.
Scott, Yeah, it's the Mylan brand and my insurance won't cover the name brand Valtrex. Without any documented evidence to show insurance or my ENT they're not going to believe any negative anecdotal reports about this manufacturer. The pharmacy said its the exact same active ingredient as the name brand.
You are correct that they won't give name brand based on that, but many pharmacies will try to locate northstar generic for you, and the insurance company won't care which generic you get, as long as it's generic. If you are not convinced that Mylan is a problem, then visit the shingles and herpes forums. They are littered with complaints.
Cricket, two things for you: 1) there is a recent success story from bilateral sufferer. http://menieres.org/talk/index.php?topic=2706.0 2) In addition to what scott tom mentioned on the brand, a couple of key points regarding antivirals. - have you started from 3g/day dosage as Gacek paper mentions? His recommendation is 3g/day for first 3 weeks, 2g/day for next 3 weeks, and 1g/day for a year or longer. - have you had a IgG antibody test for herpes? I recommend this because the path that you will seek will be different depending on the result. Bring a copy of Gacek paper below to a dermatologist or a physician and express that you want to take the antibody test because herpes may be related to your Meniere's disease as the paper mentions. https://www.ncbi.nlm.nih.gov/pubmed/25940200 If you are HSV positive, you will definitely need very good antiviral treatment. If it is negative, you should seek cervical and dental path.
I originally had it in my left ear over 20 years ago and went bilateral about 3 years ago. The only thing that kept life somewhat normal was a gent shot in my original ear about 18 months ago. It stopped the dizzy spells, but never felt right even with that, 1500 mg of sodium a day and a diuretic. My wife pretty much had to do anything that required bending over. I posted last week about the incredible experience I've had using a Blair method upper cervical chiropractor. I'm on week three and haven't felt this good since before I went bilateral. Best of luck to you.